Life with a bald head

Since shaving my head for charity on Monday I have noticed a distinct change in not only how others perceive me but also how I feel about myself.

First of all, I am pleasantly surprised to discover I have a decently shaped head under the hair as it came off ~ which is always a bonus.

Once the clippers were silenced my family encouraged me to go and look at myself in the mirror. To say I was reluctant would be a slight understatement ~ I was terrified about seeing my reflection and what version of myself would be looking back at me. My first thoughts were “I have a pea head” and then the “OMG what have I done”. After a few moments of looking I thought that okay, it’s not really a look I would choose but it’s not as utterly awful as I expected.

When I ventured nervously out of the house ~ without a hat I noticed that I drew many looks. Children either were afraid and hid behind their mums or look curiously and started pointing at me and tugging at their mums arms to find out “why has that lady not got any hair?”

Adults gave me sideways glances and I wondered what they were thinking. Did they assume I was recovering from some medical treatment, such as chemotherapy. Was I a lesbian? The gender typical “male” in the lesbian partnership ~ what some people cruelly and offensively call the “Bulldyke” (noun: bull-dyke ~ a lesbian of masculine appearance or manner).

I remember the buzz in all the “gossip” style magazines when Britney Spears had her very tragic and public breakdown around ten years ago when she was photographed shaving her hair off. So I suppose people may look at my shaved head and wonder about the circumstances around the removal of my hair. I can see how “doing a Britney” can be cathartic, a way of ending an episode of your life and opening up a new chapter ~ a way of starting off with a clean slate and changing parts of your life you are unhappy with.

Some people just think I’m a thug. A woman in a car randomly flipped her finger at me, which prior to shaving my head had never happened before. You can tell the people who think this as they make sure they give you a very pointed wide berth with lots of sidelong looks as they do so.

When in shops I either receive a total lack of eye contact and avoidance of staff OR I get some really lovely smiles and positive body language coming my way, with offers of helping me to finding items on my shopping list.

There are some folk who ask why I have no hair and some who don’t ~ it really is fascinating,  often the people in a crowd you would least expect to be supportive and encouraging are amazing and vice versa.

Also I get an awful lot of “you are so brave” ~ nope, I’m not really brave at all ~ in fact quite the opposite. I am stubborn, perhaps is my bullish stubborn streak, part of my Taurean nature, that pushes me forwards to commit to my promise no matter if I realise too late that I don’t really want to.

I am glad I did it. I wouldn’t do it again, I love my fringe to hide behind ~ I do miss it but the up side is that it was for a good cause.

Strange isn’t it? We do things we previously never imagined we would do. I am hyper aware of other people and their reactions. More likely than not misreading them because of feeling so exposed and vulnerable.

I am very aware of my age ~ when I was younger I had a buzzcut something I hadn’t even had a second thought about. I was young though, with taut skin and youth on my side. I am very conscious of my double chin.

Two days after the shave I am finding that I like being able to see my ear piercings and not having to have to “do” my hair. The girls say it’s lovely to be able to see my face instead of my usual trick of hiding behind a long fringe. I can see the tattoo at the back of my neck now too, which makes me smile.

Negative aspects are that there are members of my family who hate my shaved head and their lack of comments underlines that. I worry that at nearly 50 I am too old to carry off the look as it is very unforgiving and there is absolutely nothing you can do about that.

I don’t like wearing wigs as they are itchy and super expensive for a decent one. I love hats though and have a growing collection of the Baker Boy style, so know I can enjoy wearing my hats whilst the weather is cold to keep my poor noggin warm.

I have a few social engagements coming up ~ health depending as per. If health allows and I make these social gatherings I know I will be exceptionally nervous walking into the room and facing everyone with my new look. That though, I am sure, is perfectly normal and my paranoia will be proven to be without foundation.

Another plus and it is a VERY big plus ~ I no longer have to deal with hair wet through after menopausal hot flushes, in that respect having no hair is a massive bonus!

I do feel exposed and vulnerable yet conversely also empowered and liberated. I am glad I followed through and didn’t chicken out. The enormous bonus is that £376 has been raised for the charity SV2 ~ helping victims of sexual violence which makes me incredibly happy and that alone makes it all worth while.

Now I have no hair I decided to google some other women who have either now or in the past shaved their hair off. If they can pull it of then why the heck can’t I ~ here are just a few of the women I found who have at one time or another shaved their heads.

Charlize Theron, Anne Hathaway, Cate Blanchett, Amber Rose, Natalie Portman, Demi Moore, Jessie J, Sigourney Weaver, Grace Jones, Kristen Stewart, Toni Collett, Cynthia Nixon, Britney Spears, Jada Pinkett Smith  and of course the most popular and well known woman with a shaved head or “Buzzcut” Sinead O’Connor.

I find myself absent mindedly rubbing my head, I love the feel of the stubble under my hand. I wonder how it will look as it grows back ~ how many white hairs will be found in the regrowth.

Who knows?

One thing is for certain ~ it is an experience all right and perhaps in hindsight I should have done this in the summer because without hair it gets a bit bloomin’ chilly about the ears when you go outside!

Looking back at my “younger day” photos I found these three pictures which, although not shaved, are exceptionally short!

To anyone who has ever wanted to try having the shaved head look I say to you ~ go for it ~ hair grows back!

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x~X~x

Gone!

sv2-supporting-victims-of-sexual-violence

Today I reached my fundraising target of £300 for SV2 ~ helping victims of sexual violence.

So, as promise I shaved my head! Once shaved I dyed the stubble on my head purple, just because I’m a purple kind of gal.

before and after

So here is the promised video..

Thank you to everyone who shared my fundraising page link and to those who donated, especially to my special friend Liz for her generous donation of £100, which I have to confess made me shed a few tears of sheer gratitude.

It’s not too late to donate if you want to, just head on over to my fundraising page and follow the donation process.

Here is the link if you are wanting to donate..

https://fundraise.charitycheckout.co.uk/svtwo/pf/tanya-mawer

IMG_3771Thank you

x~X~x

Poll ~ Your Vote Decides Yes or No!

I have just found out something deliciously wonderful and I wanted to share my news with you ~ and also my dilemma.

Not long after launching my fundraising page raising funds for SV2, a charity who advocate and  help victims of sexual violence, some wonderful anonymous person donated £100 to my page.

donation 1

I have written two previous blog posts with information why I am supporting SV2, one called “Hair Today, Gone Tomorrow” and another called “What, Where, When, Why?“.

Today I found out who that person was, it is the fabulous Liz F. we met through a Facebook support group. Then became good friends ~ although our contact is mostly through the virtual medium we are what I consider to be true friends. This fabulous lady lives in France but we have managed to meet in real life too. All I can say about her is that she is one of the most genuine souls I have ever met, kind, empathetic, loving, understanding and so much more.

So, why am I torn?

I’m torn because Liz has given me a “get out of jail card” and said that she is more than happy for me not to go through with the head shave and instead suggested for me to ask for donations to keep my hair on my fundraising page.

The reasoning behind this generous gesture is that she understands how poorly I am right now as we share a mutual chronic illness. Liz is concerned that the head shave on top of my already cruddy physical health may tip the balance towards the darkside for me, which my husband is concerned about too. For me I acknowledge it is a risk and I am prepared to make it.

So, my first thought to the offer to keep my hair was YES! Then the thoughts swirling around my head were but even though I am a *cough* sturdy woman and I will look like a beach ball with a face when I have no hair, especially without my long fringe to hide behind and soften my pudgy cheeks. I feel somehow obliged to go through with my commitment and promise to shave off my hair.

I would have liked to have raised the full £300 for the charity and not yet reached my total. To those who have sponsored me, thank you so very much, I appreciate every penny you have donated and am exceptionally grateful to you for your support. To those who haven’t ~ do you have a fiver to spare *cheeky smile* pretty please with a cherry on top?

To my friend, you are incredible, truly a wonderful human bean! Your donation has meant the world to me and I thank you from the bottom of my heart for your “get out of jail” card. However, after some serious mulling it over and talking to my family about it, I have come to the conclusion that I cannot decide either way ~ SO I am opening it up to a public vote.

I know I have low self~esteem and my issue with my weight and the vanity of my appearance are ongoing battles I have with myself. Yet, to become utterly vulnerable in removing my hair and having to face the world as I am, overweight, middle aged and not really rocking the look I feel will somehow give me an insight to how victims feel. Vulnerable, as if everyone can see into their soul and what has happened to them, to feel stamped.

The people in my life never cease to amaze me and yes, surprise me too. I know going forward with or without the head shave on Wednesday that I have a huge wall of love and support around me.

The charity SV2 is the buffer, the cushion, the wall of support for victims, who often have no~one else to turn to. They advocate for them, listen to them, support them and help them make the right choices going forward for them in their own unique situation.

So for me, to lose my hair is nothing in comparison to what the victims have gone through. Having a dent in my vanity is the worst that can happen to me, but I hope it will give me some experience of how exposed the victims of sexual assault feel. Also, hair grows back ~ sexual assaults leave invisible scars.

So, it’s over to you ~ the decision of whether or not I do or do not have hair by the end of the day on November 1st is in your hands. Whatever the majority vote is by midday on Wednesday 1st November is the action I shall take.

To vote just click on this link, it’s as easy as that..

https://strawpoll.com/p9zrg51c

My Fate Is In Your Hands

psssst ~ if you fancy throwing a donation my way for SV2 then please click on the link below and it will take you to my fundraising page.

https://fundraise.charitycheckout.co.uk/svtwo/pf/tanya-mawer

Thank You

x~X~x

Fight!

I love this song and the lyrics call to me ~ especially the chorus..

“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion”

Fight! We all have battles we face in our daily lives but some are more than others. It’s a fight against the things that get you down, be it other people, your circumstances, your physical or mental health, relationships etc. Yet, saying that I don’t mean to place one persons battle above another because everything is relative. One persons seemingly small battle is to them the same as another persons perceived larger one.

Today, right now I am fighting. I feel monumentally overwhelmed by life in general. So many factors are beyond my control and it frustrates the hell out of me.

I am beyond exhausted, tired to my bones, I feel ancient. My cognitive function worries me, I know docs have tried to reassure me but I think anyone who struggles in this way will always have that fear of potential dementia. The other day I was trying to find the word for kitchen towel and after brief charade to my husband he twigged and filled in the blank for me. It sounds silly but when these episodes add up, multiplied by poor memory, difficulty following conversations and using the wrong words in sentences and not even realising ~ it’s scary!

Then you have the poor energy issue which means that my house looks like a bomb site and the floor is filthy because I haven’t hoovered or mop for over 4 weeks now ~ you can barely see what colour the stair carpet is for all the dog hair on it. Adding insult to injury I had to wash my feet before bed because of walking barefoot on the laminate floor and the resulting dirt on my feet.

Thank goodness for dishwashers, microwaves, tumble driers etc though ~ we don’t iron in this house, clothes get dried and you have the choice to wear it creased or not at all. We utilise any energy saving devise, meals, options possible to try and help us in our daily lives.

The thing that really bothers me though is how unpredictable my health is and the impact that has on everything I do. I also worry about my family, they all have invisible chronic illness too ~ it’s a constant fight and trying to help each other stay afloat and cling on for better days, which is so hard, not just for me but for all of us.

Having to constantly explain to others and gently remind them what we face is also exceptionally hard. No matter who they are it is always a struggle for them to equate an outwardly healthy looking person as being sick.

The thing is ~ we put on a front whenever we see anyone outside of our small family tribe. This isn’t necessarily for your benefit but more for our own, it’s our own silly pride that makes us create the illusion that we are okay when we aren’t. We want to feel “normal” and fit in, even if it’s just for a little while.

It’s not my place to share my incredible families individual battles here, but each of them are working hard this week, as they do every week, to appear okay and putting on a brave front. My girls are utilising every ounce of energy they have whilst facing the  winter bugs and viruses that are doing the rounds. This impacts on their health more than other folks because of weakened immune systems, they fall harder and longer with each bug.

My husband is being an absolute star in running us around, shopping, cooking, stacking dishwasher, driving here and there whilst exhausted himself.

This week is a particularly full on one, for numerous reasons. We have a special family members 80th birthday to attend on Saturday. It is going to be really tough to muster up energy to go but we will because we rarely get to see our extended family in the flesh. They live a two and a half hour drive away and the party is afternoon into evening but not finishing late. We will be going just for the party then returning home ~ a lovely friend of one of our daughters has offered to dog sit for us due to the length of time we will be away, which is a huge relief.

Simple get togethers like this are a given for many healthy folk, for us we have to plan, rest, make contingency plans and hope against hope that on the actual day we will all be well enough to go. Our track record isn’t great, usually only two perhaps three out of the five of us manage to go.

I’m just majorly pissed off today, being tired and emotional does that. I get weepy and sad then angry as hell. THEN, I start to feel awful and guilty as I imagine all the other people in situations worse than mine. It is tsunami of emotions, each taking turns to take the helm and bash me relentlessly, screaming in my brain at me.

It’s no wonder people living with chronic illness also suffer from depression, anxiety and stress. Trying to do so much and struggling each and every day with life. Having invisible chronic illness is harder still, that’s because whilst you face your own internal battles you are having to try and justify to others why you can’t meet them, speak to them, be like them.

Even when folk say they understand, sometimes you wonder if they truly do ~ especially when the media still stirs up so many untruths and unhelpful advice to “get better”. Sadly, right now there is no cure, no real treatment ~ only treatments for symptoms as and when you need help with them, to make you more comfortable.

Getting up each morning is like wading through treacle, it’s such a monumental effort to get up and go downstairs. Then to have to wash and dress is another massive drain to the battery. Although, from November the first at least I won’t have to worry about washing or styling my hair because I won’t have any after my head shave fundraiser.

So today I am writing this blog to remind myself to not give up, to continue to fight. I’m human and so it’s okay to cry, to scream, to feel self~pity and want answers, so many “whys” in my head with no resolution or answers available.

I will look for the bright side of every dark moment and if there isn’t one to hunker down and ride it out, knowing that at some point the light will reappear.

To my friends ~ I apologise if I am distant and not interacting with you. Just daily routine chores are taking every ounce of energy I have. Reading posts/threads on social media is an issue right now for me. I read them, then re~read them but don’t fully comprehend what I am reading, so have to read a third time. Then I want to reply, to comment to let you know I am there for you and support you but the words don’t flow. The sentences sound rambling and disjointed ~ so instead of hitting “post” I hit “delete” and then “like” or “love” your post instead. Know that I am around but lurking on the side~lines, sending love your way and hoping you understand.

This blog post has been edited and re~edited umpteen times ~ however I apologise if some of it sounds disjointed or rambling, this is as good as it gets right now.

I’m retreating off now ~ but felt it necessary to share this with you and hope you understand why I am distant right now.

My next blog will most likely be the one showing you my newly bald head ~ which will be in 9 days time.

If you are struggling right now I hope you find better days ahead very soon. Whatever happens we must keep on fighting ~ somehow, someday I am sure life will get better. Always hold onto hope and don’t let it wriggle out of your grasp.

I leave you with this song, quite simply because I love Freddie’s voice and the lyrics speak to me, I hope you enjoy it too..

“These Are The Days Of Our Lives”

Sometimes I get to feelin’
I was back in the old days – long ago
When we were kids, when we were young
Things seemed so perfect – you know?
The days were endless, we were crazy – we were young
The sun was always shinin’ – we just lived for fun
Sometimes it seems like lately – I just don’t know
The rest of my life’s been – just a show.
Those were the days of our lives
The bad things in life were so few
Those days are all gone now but one thing is true –
When I look and I find I still love you.
You can’t turn back the clock, you can’t turn back the tide
Ain’t that a shame?
I’d like to go back one time on a roller coaster ride
When life was just a game
No use sitting and thinkin’ on what you did
When you can lay back and enjoy it through your kids
Sometimes it seems like lately I just don’t know
Better sit back and go – with the flow
Cos these are the days of our lives
They’ve flown in the swiftness of time
These days are all gone now but some things remain
When I look and I find – no change
Those were the days of our lives yeah
The bad things in life were so few
Those days are all gone now but one thing’s still true
When I look and I find, I still love you,
I still love you.”

x~X~x

 

What.Where.When.Why?

what

What?

I am shaving my head, all of my recently grown locks will end up on the floor.

Where?

At home, the clippers working under the steady hands of Dave and Tasha, videoed by Tara and photographs by Keisha and Tasha.

When?

1st November 2017.

The clock is ticking, the days are flying by and we are approaching the big day! My fringe, my barrier, my protector will be removed and I will be laid bare with nothing to hide behind!

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I am not backing out but I admit I am scared to go bald ~ my stomach is doing backflips and my heart is racing at the thought. I had looked at wigs for afterwards but they are stupidly expensive and way beyond my budget. Instead I have purchased three different Baker Boy caps to keep my head warm throughout the winter. All three came to £12 with free p&p via Amazon, a price I like very much ~ plus will coordinate with my black scarf, gloves and coat.

baker boy hats

As you can see, I like black ~ but the hats vary, one is knitted, one is double lined and the other unlined so great for the sunnier winter days.

Why?

Why am I doing this? It’s because two very close friends have sadly been victims of sexual assault. After reporting the assault to the police both victims were given a card with the contact details of a charity called SV2.

SV2 is a local charity which is designed to support victims of sexual violence of all ages and genders. In some areas this service is called Rape Crisis or something similar. They offer counselling and support to both children and adults. I cannot stress strongly enough the importance of their work in advocating and support these victims. Of providing them with the options open to them and providing ongoing support throughout the process if they choose to proceed with pressing charges, anonymously reporting or doing nothing.

They categorically do not help any perpetrators of these crimes.

Unfortunately SV2 is a charity and they have to continually seek funding to pay for the service they provide. Sadly, they had to post this message on 24th July of this year..

“Unfortunately as SV2 has not been able to secure future long term funding for therapy and as the waiting list is already significantly high, SV2 has reluctantly taken the very difficult decision to close the waiting list and will not accept any more referrals into the therapy service.”

Knowing how vital this service is for the victims of these crimes I am astounded that they are having to work as a charity and not have regular secure funding available to them. The statement they were forced to make about closing their books to further referrals at this time upset me enormously because it means there are victims of sexual violence with no support to help them deal with the aftermath of such a crime.

It takes specialist counsellors to help them to work through the events that occurred and to decide on what action to take that is best for them. It’s not a simple case of reporting the crime and pressing charges. Sometimes reporting the crime is where the process ends ~ to proceed with pressing charges is a massive step with additional trauma on top of what is already being experienced.

There is a “client feedback” section on the SV2 website, I will share a few of the comments here because I think their words help express the desperate need for this service..

“Thank you for all your hardwork and support. As you know it has been a very gruelsome and distressing time for my daughter, without your encouragement and support she would not have had the courage to carry on.”

“Thank you for all your support and fantastic words of wisdom, but especially for being by my side in court. I can’t thank you enough! “

“I have an incredible therapist at SV2. She is very slowly restoring my faith in professionals. She’s worked with me for 8 months & challenges me every week. Therapy is so hard, it’s not nice facing the things that you’ve pushed to the back of your head for so many years. I’ve built a highly impressive wall around myself, with very solid foundations. It’s incredibly difficult to remove any of those bricks. But I’ve learnt that the wall is there to serve a purpose, it protects me & for whatever reason, I’ve needed that protection. My therapist works with me in ways that I understand & spends time exploring different ways for me to engage. She accepts that I find it difficult to talk & so finds different ways for me to express what I need to say. No one has done that before, they’ve all just said that if I won’t talk, they cannot help. They haven’t spent time understanding why I won’t talk. There’s cuts to funding across the board as we all know. She’s currently secured me another 12 weeks therapy & then after that I will either have to re-refer myself or discuss with my GP using my Personal Health Budget to fund future sessions. I’ve waited years & years for support that is the quality I am currently receiving. I can’t afford to lose that. I am on another waiting list with the recovery services, but that wait is approximately 2 years & not getting any shorter. The struggle to get adequate, appropriate support is very real.It’s #timetotalk #timetochange Thank you”

From my perspective as a friend supporting people I care about going through the process I can say, hand on heart, that SV2 intervened at the most critical time. When thoughts of self~harm and suicide after the assault were increasing to worrying levels the quick intervention of the therapists at SV2 managed to reduce those thoughts and help them to realise that they weren’t at fault. The attack was not invited and that they had to face, address and work towards rehabilitation. Most importantly, as well as helping reduce suicidal and self~harming thoughts they were taught ways to help when going through distressing panic attacks and disassociation episodes. Given the tools to start venturing out of their front doors and facing being out and about in the world once more.

Attacks like these are life changing. The victims never recover to be the person they were prior to the assault. The are always vetting the people around them, cautious about meeting new people and inviting them into their inner circle. They have been left with depression and anxiety which they are both facing in their own ways with further counselling and medication. Life goes on but it’s never the same, that more than anything breaks my heart ~ seeing the twinkle and mischievous glint missing from their eyes.

If you would like to support me in raising necessary funds to help SV2 to continue their work and hopefully reopen their book for referrals you can, simply click on the link below and following the donation process on my fundraising page.

You can select the option of how much to donate and then input your credit card details. At the point of donation you are asked if you wish to pay the £0.94 processing fee or not. If you choose not to pay that’s absolutely fine, it just means that 94 pence of your donation will go towards the processing cost and the rest goes 100% to the charity.

https://fundraise.charitycheckout.co.uk/svtwo/pf/tanya-mawer

I promise *gulp* to upload a video along with supporting photographs in a blog after the hair has come off ~ it won’t be pretty but it will be worth every penny that is received towards helping SV2 continue their service.

sv2-supporting-victims-of-sexual-violence
Thank you

x~X~x

Auditory Hallucinations

Last night and this morning have been highly stressful. I spent the night waking up to hearing conversations that apparently weren’t happening.

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I also kept falling back into the same dream, going to the point I left when waking ~ I don’t remember the dream but do remember it unsettled me.

Throughout the night I woke up several times because of urgent whispering in my ear, only no one was there! Each time I got up to the loo to make sure I was awake and to hopefully “shake it off” before getting back into bed and to sleep.

I also “heard” my middle daughter having conversations with people between the hours of midnight and 4.30am, I know very specific times but I looked at the clock every time I woke.

Finally this morning I woke up to hearing my husband having a whispered conversation with my eldest daughter ~ only he had just got up, wasn’t talking to anyone and eldest child is at her own place in town!

So I am feeling a little freaked today ~ and tired!

The events of last night and this morning had me searching for reasons why I had this experience. I do remember my middle daughter having auditory and visual hallucinations when first diagnosed with ME post meningitis.

I think the doctor at the time explained the reason for it as her brain being tired and so misfiring signals ~ or something like that.

Now I am up ~ in my pjs & dressing gown whilst caffeinating to ensure I am really awake, I am having a google to see why this is occurring. It’s worrying enough having cognitive issues with speech and memory without this on top!

16Now I have intermittent tinnitus ~ but that just is weird ringing and noises in the ear, it comes and goes thankfully and is rarely continuous for a long period of time. The auditory hallucinations though, these are a new occurrence and one that has really freaked me out because the whispering conversations sounded so real.

So I googled..

What Are Auditory Hallucinations?
Auditory hallucinations are false perceptions of hearing sounds, like voices, music, etc.,without any real sensory stimuli. Auditory hallucinations have been reported in those suffering from epilepsy, brain tumors, migraines, dementia, Alzheimer’s disease, Lewy body dementia, bipolar disorder, post-traumatic stress disorder, and Parkinson’s disease. These hallucinations have also been known to be induced by drugs, such as cocaine and amphetamines.
Perhaps most surprisingly, auditory hallucinations have been reported in approximately 15% of people with no mental or physical health problems whatsoever. The most common condition associated with auditory hallucinations, however, is schizophrenia, with a reported 70% of schizophrenic patients experiencing them.” 

The same article goes on to say that hearing auditory hallucinations is usually caused by imbalances of chemicals in the brain, most notably Dopamine. Another cause could be due to the Thalamus ~ this is because the thalamus sends signals from our ears to our auditory part of the brain which then interprets what sounds are being heard. Finally, the article says it could be to do with abnormal activity in the right hemisphere of our brain.. If the thalamus is playing up then auditory hallucinations could follow.

Interestingly, on googling Dopamine for patients with Fibro & ME this came up, dopamine is a neurotransmitter and people with Fibro and ME tend to have low dopamine levels which can result in a number of symptoms and conditions.

I looked up Thalamus issues relating to ME and Fibro next and it came up with articles informing me that I’m not alone in this, the article; Sensory Overload: Study Suggests Brains in Fibromyalgia Are Being Pummeled With Too Much Information was very interesting. This explains my cognitive issues as well as the auditory hallucinations ~ I know my “dementia” like cognitive issues become much worse when I am suffering from Post Exertional Malaise (PEM), which is often as I am currently struggling to pace effectively so seem to permanently be in a “crash”.

The article says that people with ME and Fibro become easily over stimulated by outside factors and so experience sensory overload. Usually, for healthy folk, the body fires up the sensory gate which filters out what is important and what isn’t. For folk like me with ME and Fibro, this sensory gate is often broken, it is thought that the area which is broken is in the part of the brain stem known as the “reptilian brain”. It is the area of the brain necessary for survival but doesn’t come with high cognitive functions.  Usually it protects the brain from over stimulation but not when broken for us folk with ME and Fibro.

On further googling I came across this article, which says that anxiety can cause simple and complex hallucinations too.

This has made me feel much better this morning, I’m not freaking out so much now that I know there are reasons for it ~ the most likely cause is my poor old brain is feeling overwhelmed and so misfiring with messages received making me think I am hearing things that quite simply aren’t there.

I know I haven’t gone into any great detail here and I won’t because I don’t want to stress my brain/body out any further. However, after my wee google session I now feel reassured that it’s nothing to be concerned about. Just as numerous doctors and consultants previously reassured me about my “dementia” symptoms, that I don’t have it but that my body is so exhausted due to my whammy of chronic illnesses that it misfires and causes my cognitive functions to nosedive. I am now looking at the auditory hallucinations as an extension of that and realise that the severe lack of pacing over the past few weeks must be the contributing factor in it all.

Thankfully, on Friday I will be disappearing off to my “happy place” ~ away from stimulation and into the arms of the coast, sea breezes, salt, sand and sea. By the end of next week I hope to have returned to some semblance of normality ~ here’s hoping!

As with anything though, if you experience anything out of the norm with your health/body I would always advocate that you get it checked out.

My motto is;

If in doubt19x~X~x

 

What do you do?

what

What do you do when something beyond your control affects your day, your week, your year, your life.

I bought a hoodie, one of two that I love, from the talented Stacy Hart aka Mama Chill. Both were from her “running on empty” range, which are extremely appropriate for anyone with a chronic illness which affects energy levels. If you don’t know Stacy then please head on over to her blog because she’s one sassy, incredible fighter and someone I respect very much.

Here’s an old pic of me wearing the black one I have (I have another in grey with a different graphic on the front ~ it’s a skeleton running with the words “running on empty” alongside it). Next time I wear them I will have to take photos for you!

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I know that if you follow this blog you are aware that I have a number of chronic invisible illnesses which affect my cognitive function as well as my immune system, energy levels, mobility, gut mobility and cause me pain in my joints and muscles (among a myriad of other symptoms). If you are here for the first time I’ll list them now with the links for further information. Myalgic Encephalomyelitis, Hypermobility Ehlers~Danlos Syndrome, Fibromyalgia, Diverticulitis, Depression, longstanding since my late teens and lastly pesky kidneys, stage 3 kidney disease that currently only requires annual blood tests to monitor.

So now I have that out of the way, I know I’m greedy hogging all these conditions instead of sharing them around, you will understand why often I have to adapt to circumstances beyond my control.

Referring back to Mama Chill, she is quite the wordsmith and wrote a poem about M.E which, to be honest, could be also written about my other conditions too ~ especially the Fibro and HEDS..

d87d7b3777dab11a969faf1f5f35b9ba--fatigue-syndrome-fibromyalgiaIt’s exceptionally frustrating to not be able to plan to do things ahead and know 100% that you will be able to make it. I do plan ahead, try to take in all considerations, make contingency plans, but even then I can’t guarantee that on the day, despite all preparations, I will be able to do it.

So, what do you do? Is my question, to try to live a life to the fullest whilst also managing your physical and mental health to the best of your ability.

One of the girls doctors came up with a brilliant analogy, which I prefer to The Spoon Theory written by Christine Miserandino. Although the spoon theory is great, for me, the car analogy seems easier for me to understand, clearer I suppose.

Imagine your body is a car. Not a bright shiny new one but a real old banger, the exhaust is hanging low and smoking, the speedo is broken, it’s not economical and is covered in rust. It’s old, its rough around the edges, not a great beauty to be honest ~ but it drives, it tries, it may need jump starting now and then, the battery becomes flat easily so you keep a charger in the boot, along with the jump leads, spare tyre, fuel caddy and the portable tyre air compressor which plugs into the cigarette lighter. Knowing its age and potential for breaking down you also keep a blanket, bar of chocolate (supersized), warm coat, warning triangle for the road as the hazard lights don’t work and a portable mobile phone charger for that AA call ~ your poor car is too old to have built in usb chargers and you daren’t overwork the poor cigarette lighter in case you need it to plug in the tyre air compressor.

Our bodies with chronic illness are like the old banger ~ our gas tank may have a few corroded holes in it too, so no matter how much fuel you put in it, it continues to trickle away meaning you don’t get as far as you would like on it and need to take frequent stops to top up.

Like the old car, we can prepare as much as we can to deal with any issues but can’t always foresee a major break down, when the tow truck has to be called in and major repairs carried out.

We love our old car, it’s weathered many storms despite all adversity and we can’t afford to trade it in for a new model anyway.  Instead we scour the papers and news outlets for news that fixes have been found for our model of car, that we can patch it up and the garage will work it’s magic until it is like new, highly economical on fuel, exhaust is secured and no longer smoking and we know we can rely on it come hail or snow.

We are at the stage with my illnesses where we are still scouring the news, no fixes have been found ~ although many attempts and trials have been made. We have to be patient and sit it out, hoping that a mechanic somewhere will have a moment of genius and figure it all out.

That analogy makes more sense to me than spoons ~ which perhaps is just because my brain can see the picture more clearly that way.

So, what do I do? I wait, I hope and I do whatever I can to help myself feel better, do better, plan better. I don’t always get it right. I often run out of fuel halfway to my destination and spend more time than I would like on the ramp in the garage with mechanics scratching their heads before patching me up and sending me on my way.

Life isn’t bad though, it could be far worse. Humour is a factor in how I can deal with the cards life has dealt. Plus my dysfunctionally functional family around me keep things interesting and none of us get to keep the “I am considerably more poorly than you” t~shirt.

I wait for medical breakthrough.

I wait for awareness to break through to the masses.

I wait for compassion and understanding from others, who as yet don’t understand the limitations these illnesses bring.

I wait for health care professionals to all be on the same page and following current protocols instead of those initiated by dinosaurs from the past.

“One day” I tell myself “one day we will find a way around these illnesses and reclaim the life I want for myself and the others who are suffering too.”

Hope must be kept alive, yes you can chunter and swear until the air turns blue to vent, to blow off steam ~ then re-centre and continue forward.

Remember ~ there is life in the old banger yet!

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x~X~x

 

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